Wondering How Many Out There Didn't Get A Proper Diagnosis?

[jabberwife]

OK, just wondering kinda what my odds are. I have a father, brother, and sister who are all celiac. I have been told I have IBS, but in Jan 2005 had a blood test that came back negative. IgA at like 1 unit or something. Went to a gastroenterologist who still said it was IBS and prescribed me Zelnorm. Quit taking that after a few months, certainly doesn't help. I have alternating C with D but C dominant, as well as some serious gas at times. (yuck!)

Well, I have had itching on my shins, mostly, for the past few years, and there's no rash, but it's crazy itchy at times. I asked my doctor about it, and after running through possibilities, he thought I should look at food allergies. Well, I figured there was no correlation between my consumption of anything, except gluten and lactose, which I ate all the time. So...I decided to go gluten free (because of family history.) After about 3 weeks of gluten-free diet, I decided to also submit stool samples and gene tests to Enterolab. All stool samples came back negative, but 2 genes DQ1, predisposing me to gluten sensitivity. I figured...my tests came back negative, so I went back on gluten. (after about a month gluten free). I did one challenge on purpose, one on accident, during that month, and thought I had a reaction both times, although delayed 2-3 days. Serious D. But when I went back on gluten 2 weeks ago once I received results, I felt really foggy and lethargic the first few days, but other than that, no big difference in symptoms. (While I was gluten-free, I still had some C and gas)

Went to my doc Monday. Talked about what I had done since the last I saw him, and he felt I should go gluten free for longer. Said I had not been on the diet long enough to be sure. He suggested 90 days. I am back on the diet, but I am wondering what the odds are that I really am sensitive. I didn't show a big change (except for what I thought was a gluten reaction explained above) on the diet--I didn't feel a whole lot better, and still had gas. But my body could have just been adjusting the entire month I was gluten-free before.

Anyone else gone through this? I did think it was weird (and maybe I'm reading something into nothing) but my IgA test on Enterolab was 6 units, vs 1 unit from the blood in Jan 05. I was already gluten free when I did the Enterolab test, but it's higher? Or maybe it just picks up more antibodies? Who knows.

Sorry for the long long story! Any insight would be appreciated.

[rinne]

For me the decision to be gluten free is based on how I feel not on a medical diagnosis. I have only been trying for three months and have accidentally glutened myself several times. I also gave up dairy after the first month. I can't say that I am recovered yet, I am still struggling but relative to how I felt prior to being gluten free there is no comparison. I will never eat gluten voluntarily again.

I am proceeding with the endoscopy and colonoscopy to rule out other problems but I will trust my gut when it comes to the diet I consume.

[CarlaB]

I used Enterolab after two months gluten-free -- my IgA was 60, so being gluten-free should not have affected the test. I also have two DQ1 genes. Enterolab is a different test with a different scale, so you're not comparing apples to apples when you compare it to your blood work. It sounds like you are not having a reaction to gluten.

That being said, many people just feel better when they don't eat it. My husband gets gassy and bloated from eating it, so does my daughter. My daughter avoids it, we haven't had her tested, but she never had any symptoms either. My daughter's seasonal allergies have disappeared now that she's gluten-free.

There's nothing stopping you from avoiding it. Since you have the gene, a sensitivity could be triggered from many things, I believe even over-consuming gluten. The good thing for you though is that you can enjoy a glutenous treat once in a while knowing you are not actually having an immune reaction to it. You also will be able to eat out without fear of contamination.

If you feel better not eating it -- don't!!

edit-- sounds like you have a good doc with an open mind!

[mle-ii]

Another thought is to test for IgA deficency which would throw off those tests.